30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Psoriatic Arthritis, Degenerative Disc Disease, Fibromyalgia, nerve damage from surgery, and possibly MS
2. I was diagnosed with it in the year: I was diagnosed with Fibro at age 33, PA at 34, DDD at 44. Nerve damage from surgery at age 40. Specialists are still undecided about MS
3. But I had symptoms since: Mildly since age of 10, moderate during my 20’s, finally severe in my 30’s.
4. The biggest adjustment I’ve had to make is: Becoming physically dependent on others.
5. Most people assume: That sitting in a wheelchair is relaxing or that I must not be in pain if I am out of the house. They do not understand how much energy I spend or how much pain it adds just to sit up.
6. The hardest part about mornings are: I had to get over the fact that my body will not conform to a normal schedule. Sometimes my day starts at 8 and on others it starts at noon. But no matter what time my day starts I have to ease my body into the day with gentle stretches before attempting to leave my bed.
7. My favorite medical TV show is: I used to enjoy these types of shows, but not since pain too over my life and doctors made errors that made things even worse. After years of being treated like a drug seeker, hypochondriac, and being ignored or misdiagnosed, I can not watch tv shows where people are diagnosed and treated within hours. It just depresses me.
8. A gadget I couldn’t live without is: My phone, tablet, and laptop…They are my gateway to the world.
9. The hardest part about nights are: My nights improved after I began treating conditions with marijuana. I will still have an occasional sleepless night, but nothing like the endless sleepless nights I had before.
10. Each day I take __ pills & vitamins. (No comments, please) 0
11. Regarding alternative treatments I: after having many adverse reactions to most prescription medications and being allergic to others, I had to find something else. I chose marijuana and have had relief that I had never experienced with prescription medication. Also massage and yoga.
12. If I had to choose between an invisible illness or visible I would choose: Visible, then people wouldn’t doubt my condition
13. Regarding working and career: I am unable to work outside my home or follow a set schedule.
14. People would be surprised to know: That I am in pain 24/7. Those in pain get it, but the general population does not. That it is possible to be in excruciating pain and still be happy.
15. The hardest thing to accept about my new reality has been: Losing some of my freedoms. I miss being independent. I miss driving myself to the grocery store.
16. Something I never thought I could do with my illness that I did was: I never thought my experiences would bring comfort to others or that they would help them cope.
17. The commercials about my illness: are a joke and make it harder for those not experiencing my pain to understand what I am really going through.
18. Something I really miss doing since I was diagnosed is: going for walks.
19. It was really hard to have to give up: walking and driving. Occasionally I can handle a short drive, but rarely more than once or twice a month.
20. A new hobby I have taken up since my diagnosis is: Loom knitting. My hands won’t allow me to knit in the traditional manner and looms have allowed me to create gifts for my loved ones.
21. If I could have one day of feeling normal again I would: I don’t know, I don’t allow myself to think that way, it is depressing. I prefer to focus on what I can do or what can I do to do something differently.
22. My illness has taught me: that I am tough.
23. Want to know a secret? One thing people say that gets under my skin is: But you don’t look sick!!!
24. But I love it when people: accept my limitations, don’t try to cure or fix me, and love me for who I am.
25. My favorite motto, scripture, quote that gets me through tough times is: Hakuna Matata
26. When someone is diagnosed I’d like to tell them: to research every diagnosis, pill prescribed, and test or surgery. Join groups with people suffering fro the same or similar conditions, it helps to know that you are not alone.
27. Something that has surprised me about living with an illness is: just how much pain I can handle. The other is that just how ignorant and rude others that have never experienced can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: To give me a gift card for a restaurant. It is difficult for people to know which days are my best or worst. Heck I don’t even know until that moment. But a gift card instead of bringing over a meal, allows my family to eat something we are sure to like and when we really need it.
29. I’m involved with Invisible Illness Week because: I want to inform others about what it is like to live in constant physical pain. The good, the bad, and the ugly.
30. The fact that you read this list makes me feel: Sad and happy. Happy because you cared enough to read it, sad because so many of us have had our lives turned upside down and inside out all because of our invisible illnesses.
5 thoughts on “30 Things About My Invisible Illness You May Not Know”
Hello, I just found your blog today. I am happy to see how dedicated you are to increasing awareness of how someone might not fit the expected look of a “sick” person. I have systemic and discoid lupus and arthritis is one of the symptoms. I also suffered from arthritis pains since I was a small child– it has been a constant throughout my life.
I look forward to reading more about your story and getting to know you better. I love what I’ve read so far!
I read your 30 things and I wanted to let you know how strong and brave you are! You are an amazing woman. I feel so horrible for you, with all of your painful conditions. It’s a shame what you have to deal with. I hope one day, you can be pain free and hopefully walk again, and do everything you please. God bless you and much love. ((Hugs))
Awe thank you for your kind thoughts…hope you have a blessed day filled with gentle hugs. 🙂
Hi! I am an RN retired die to fibromyalgia. Regarding your sleeplessness, have you been checked for sleep apnea? About 80% of people with fm also have sleep apnea. I was finally diagnosed after 22 years of insomnia. I hope you are having a good day and take good care!!! Big hug, Valda
Thankfully sleepless nights are rare, usually because of added mental stimulation or an increase in pain.